Emerging roles and opportunities for rare disease patient advocacy groups.

Patterson, Amy M; O'Boyle, Megan; VanNoy, Grace E; Dies, Kira A

Patterson, Amy M; O'Boyle, Megan; VanNoy, Grace E; Dies, Kira A.

Afiliação

Patterson AM; Department of Genetic Medicine, Johns Hopkins Hospital, Baltimore, MD 21287, USA.
O'Boyle M; Coalition of Patient Advocacy Groups, Rare Diseases Clinical Research Network, Arlington, VA, USA.
VanNoy GE; Center for Mendelian Genomics and Program in Medical and Population Genetics, Broad Institute of MIT and Harvard, Cambridge, MA, USA.
Dies KA; Rosamund Stone Zander Translational Neuroscience Center, Boston Children's Hospital, Boston, MA, USA.

Ther Adv Rare Dis ; 4: 26330040231164425, 2023.

Article em En | MEDLINE | ID: mdl-37197559

Palavras-chave

clinical trial; drug development; patient advocacy group; registry; research; support

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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Tipo de estudo: Qualitative_research / Risk_factors_studies Idioma: En Revista: Ther Adv Rare Dis Ano de publicação: 2023 Tipo de documento: Article País de afiliação: Estados Unidos

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